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What it's like to have a super long MRI scan (and some tips!)

Last week I had an MRI - it wasn't my first, but it was my first really long one. A few things caught me by surprise, so I wanted to share what they were, as well as a few tips for making long MRIs more comfortable.

Here in Vancouver, they've started running the MRI machines 24/7 to get wait lists down (aside: did you know Canada has one of the lowest per capita numbers of MRI machines among OECD countries?), so when I got called for my appointment, the first one I was offered was in the 2-4am slot. Yikes - the last thing my sick body needs is being up all night. I opted to compromise and wait an extra two weeks to get a slightly less arduous time slot, resulting in my approximately 80 minute scan being scheduled for 11:15pm-12:35am, with an arrival time of 10:45pm. Because I've developed a pretty hefty case of dysautonomia, which kicks in like a ton of bricks around 10pm every night, I anticipated struggling a bit while I had to be vertical between leaving our home and laying down on the MRI bed.

When we arrived, we had to come in the ER entrance (because the other doors are locked from the outside at night), and take a long, winding walk through the creepy, deserted bowels of the hospital to get over to the MRI machines. I was really glad to have Wheelie with me, and a willing Bruno to push me in it, as that would have been really difficult for me to walk especially after bedtime, nevermind repeating it after the scan was done. They were running a bit behind schedule, so as expected I was starting to crash and get dizzy (and really hungry, I forgot how that happens when I stay up late!) by the time my scan started, which was just before midnight. Luckily, laying down typically resolves most of my dysautonomia symptoms at least temporarily, so I was relieved to get started.

I was finished around 1:15am and we made it home in record time on the deserted streets, and I was showered (you'll see why this was needed) and in bed at 2am on the dot. It all went pretty smoothly, but as much as I was prepared for the length, I was not at all prepared for the consequences of a longer scan.

What's different about long MRI scans?

I've had a few MRI scans in my life before, and this one didn't even require any IV contrast, so I was feeling pretty chill about it aside from knowing how being up late would affect me. I've done yoga and a fair bit of meditation, and I'm not claustrophobic, so I wasn't worried at all about laying there for that long - I was pretty sure I could lay there for 80 minutes no problem, unless something drastic happened like a bowel flare up.

Heat

During my intake, the technician (who was excellent by the way - don't you love when healthcare workers are both efficient AND friendly???) warned me that the machine would probably get pretty hot running such a long, mostly continuous scan. Apparently the longest MRI scans tend to be around 90 minutes, so I was close to that, but since I wasn't having contrast, there was very little stopping allowing the machine and I time to cool off. That made me a little concerned, as part of dysautonomia is a vastly decreased ability to regulate temperature, and often very low heat tolerance. Being too hot, especially for an extended amount of time, makes me VERY dizzy, lightheaded, and nauseous, and can even cause me to have pre-syncope (i.e. start passing out). I told him about this, and he said there were fans in the machine, and to do my best. He handed me my hospital attire - two gowns (one to be layered over the other for maximum coverage, and a pair of pants). I opted to put one of the gowns back and skip the pants, since the gowns are huge and I can always double wrap them. This was a VERY good call - if I'd had all three layers on (including two double wrapped robes!) I would surely have roasted even more terribly.

The first 30 minutes or so were totally fine, like the other scans I've had in the past. I just laid there and zoned out into meditation mode, and listened to the machines rhythms, which always seem to me like my own personal electro concert. The second 30 minutes or so were a lot warmer, it was something akin to very slowly being microwaved - both the MRI bed and me, especially my back which I was laying on, started getting pretty toasty. And the heat I felt wasn't just coming from the bed, it was inside me, as the machine was heating me up internally just like it was the bed. It's a pretty weird feeling! But I breathed through it, and managed okay.

The final 20 minutes (including redoing a part of the scan, I'll explain why below) were flat out terrible, largely because by this time I felt like I was in a sauna, and was REALLY uncomfortably hot and sweating like crazy. The tech even turned up the fans when I said the heat was getting to me, but there was no getting around it - it was really stuffy and hot, and I felt like I was very literally being slowly cooked.

Discomfort - both physical and mental

This was my first MRI at VGH and the machine wasn't really (or maybe at all?) padded, especially the headrest for the head cage thing that I had to nestle my head into. While I don't remember this ever being a problem in previous scans, after 80 minutes of not moving at all, my SI joints and especially the spot at the back of my head that was resting on the hard plastic cage were hurting SO MUCH. The point on the back of my head was so bad I came close to stopping them to get a towel or something, but they'd already had to stop the machine once (more on that below), so I just decided to try and suck it up. It's hard to say why it hurt so much, but it really felt like someone had hit the back of my head with something hard - it was probably bothering me even more than the heat. But I just kept breathing and telling myself it was all temporary, and I managed to endure it. Luckily, as I'd hoped, by the time we got home my head had already stopped hurting and was totally fine.

The other issue causing a lot of discomfort, which actually resulted in both having to redo part of the scan, and having to interrupt it, was the second cage that was put over my hips and abdomen. The tech waffled on whether to use it (apparently it's not as needed on small people?) and didn't attach it to anything - the lower end hovered above my hips, but the upper end's edge sat directly on my ribs. After maybe 20-30 minutes with this probably 5 lbs cage digging into my ribs, this started getting pretty uncomfortable and hurting, as with every breath the corner pressed on them. To try and deal with this, I started taking longer, slower, deeper breaths - since I didn't have to do breath holds for the scan and I'd been told just to breathe normally, I didn't think it'd be a problem. Well, it turned out the weird breathing I was doing to deal with the cage jabbing me in the ribs actually messed up part of the scan. Because I was breathing so deeply, it blurred some of the imaging, resulting in needing to redo some segments. When the tech told me he needed to repeat some parts, and asked me to breathe less, I told him about the cage and asked if he could stuff something under it, so he had to eject the bed and adjust things.

From that point on (which must have been somewhere around two thirds of the way through), I was also instructed to take shallower breaths and try not to move as much while I was breathing. This actually contributed to how arduous the last 20 minutes or so were, as not only did I have to stop doing deep breathing, which was helping keep me calm when I was trying not to freak out about how freaking hot I was, and how much my head hurt, but the shallow breathing actually made the heat even harder to tolerate. I was basically purposefully hyperventilating. Funtimes!

For mental tolerance, if you have done yoga or mediation, bust out those skills - pretend you're in an arduous yoga posture and keep breathing through it if you're uncomfortable, reminding yourself even though it feels like it's taking forever, it's temporary discomfort and you can get through it. And if you're worried about the length of being in there, try and get into that zoned-out meditative state where time passes a bit more easily. (To those who are actually claustrophobic, I don't know much about this, but my understanding is that if you inform your doctor ahead of time you can be given some medication to sedate you, much like with other uncomfortable or stressful medical procedures.)

It can be harder to get up after them!

When it was all over, the tech who I'd been dealing with the whole time, who was great and I'd told about the dysautonomia at the beginning, must have had to go intake someone else, as he was not the one who got me out of the MRI machine at the end. I think it was the radiologist - an older, gruffer man who I hadn't spoken to at all up till then. It was a bit of an unfortunate ending, as he was really hurrying me to get up and out of the machine, and at the end of the scan I was pretty disoriented from it all, and failed to advocate for myself needing more than 10 seconds to get up and out of the room.

The heat and fact that it was past 1am meant that as I tried to get up, I started blacking out a bit (pre-syncope is like the worst head rush you've ever had, where your vision goes black and your ears start ringing) and had to shake my head and body to get the blood to start pumping back up, hoping I wouldn't have to suddenly lay on the hospital floor (ewwww). But at the same time (and this I didn't anticipate at all), the 80 minutes of being completely immobilized on an extremely hard scanning table had also really made my joints gel - easily as bad as stiffness as I get in the mornings after a night of sleep. So as I tried to get up, I suddenly realized I was crazy stiff and had some trouble walking (also while trying not to let myself actually black out from my blood pressure tanking). I was scrambling to get the earplugs out and gather up my glasses and inhaler, and try not to pass out, and get my legs to do the whole walking thing, while being hustled out of the room by this guy who didn't have any sense that I wasn't a spry young creature who could just hop right up. (It never ceases to amaze me that many healthcare workers seem to forget the patients they're dealing with are actually sick.) Luckily, Wheelie was just outside the MRI room door, and I was able to sit down, get my bearings, and have a drink of water before going outside to change and find Bruno.

My tips for long MRI scans

1. Prepare for the heat

If you have any health conditions that might be exacerbated by a long continuous scan, like especially dysautonomia or any other condition that makes you heat intolerant, firstly tell the technician at the intake and ask if they can turn the fans up to maximum from the get-go (the tech I had was able to turn them up when I said I was starting to get really hot). Secondly, wear as little as possible to help keep you cool. Maybe even hike up the sleeves or hem of the gown, so you have less stuffy clothing making you even hotter. Go in as well hydrated as you can stand to without needing to pee in the middle!

2. Make sure you'll be as comfortable as possible before they start

When you lay down, or even before, assess the level of padding, especially if you have any kind of painful condition like inflammatory arthritis or fibromyalgia. If the head cage has no padding (this one had just a sheet over it), ask for something like a towel or even some scrunched up paper towels. Really, anything that will make your skull not fill with searing pain once the same spot has been bearing weight for over an hour. Same for any other bony parts of your body - if your hips or SI joints or tailbone are on a hard surface, ask for a sheet that's folded up to put under you. It's not much, but it's definitely better than nothing. Do the same if you have a cage sitting on top of your bony bits - once the tech put a rolled up sheet under the edge of the cage that was digging into my ribs, it was so much more comfortable, and I could breathe more normally (or I would have been able to if I hadn't been told to breathe shallowly!)

3. Just tell them if you need a special accommodation!

Finally, don't be a hero or a people pleaser (like me - old habits die hard!) If you need to get up more slowly at the end, just SAY SO. I didn't really have my wits about me and wasn't anticipating having so much trouble getting up and out of the room, but if there's a next time, I'll definitely just say something like "I have low blood pressure and I need to get up slowly so I don't pass out". Just that small bit of self-advocacy would have been enough to buy me an extra 30 seconds to make sure my BP was able to adjust to being upright again after the late night roasting, and it would have also made it a lot easier to start walking with my seized up joints. Or in hindsight, I could have even requested that the tech or Bruno bring Wheelie in so I could transfer straight to sitting instead of trying to walk out. It might feel like a huge imposition to be in a room that costs something like $5 a minute to occupy, but trust me - it's better for everyone if you don't pass out or fall down in said room!

I hope these tips are helpful, and that my little tale provides some sense of what you might experience if you have a long, hot MRI scan in your future too. Thanks for reading!